Well, since my last two full blog posts, the world has been through some real March madness.
Let’s start with my ribs.
After my Slipping Rib Syndrome blog was posted in mid-February, I had just gotten a diagnosis of Influenza Type A.
Let me tell you that this was one of the worst sicknesses I have experienced. I woke up with hot flashes and cold sweats, my body and muscles were aching and I found myself not eating. I just blamed my Crohn’s disease and body. It was only after I had a rising fever of 102 that I went to the hospital and tested positive.
I had never had the flu before and I don’t ever remember having the test done before. I would have remembered that noodle-like stick that they have to shove up your nose. I fought the poor nurse trying to test me. I even asked if I could shove it up in my own nose.
Once I saw the marked line that it had to reach, I knew that I couldn’t do it to myself and let the nurse do it. I grabbed the side of the hospital bed and tried to let her do it. I fought her again for the second try, pulling my head back and away from the stick up my nose. Luckily, she got it in far enough and we didn’t have to try again.
The last thing I expected was for the nurse to come in and tell me I tested positive for Flu A. I was shocked! I had only been in the public once since January’s surgery and had a few appointments that week. I guarantee my visits to the VA that week are the culprit.
I was already two days into the flu by the time of my visit, so Tamiflu was prescribed in time and I got to practice staying at home some more before it became the right thing to do this year.
Come March, I was over the flu, thankfully. I was only a month post-op after having my rib resection and titanium plate removal surgery.
Having the flu really put some stress on my ribs and chest area with my body still healing from surgery. I have had a few follow-up appointments with the cardiothoracic clinic, at week two and week six.
I am currently at week 10 post-op, but I have still been trying to take it easy on these ribs. In the middle of week 6, I had an opening appear in my surgery incision, with slight bleeding.
This has been a concern to me because after my neurectomy surgery in January 2019, I had months of fighting infections and incisions that refused to heal. I had two major infections with those surgical sites, with the incisions needing to be opened again and drained of infection. See My Wonky Ribs and Neurectomy
I have been monitoring this current incision and opening, and so far no major problems have come up. I have to watch for a fever, and for redness, swelling and draining from the incision. If I do experience this, I know to go to the ER and prepare myself for them to open the incision, again.
Otherwise, I had started physical therapy to help correct my torso and relieve some of the pains from three chest wall surgeries. I had a consultation at the VA before the COVID chaos, and I ended up having to cancel the next two visits.
Because the chaos is not dying down, but getting worse, my physical therapist started virtual appointments with me this week. Because the VA is trying to keep unnecessary people away from their facility to abide by social distancing rules, a lot of my appointments have been canceled.
We had ordered a posture-correcting brace in my physical therapy consultation but I am sad to say that it didn’t work for me. We wanted one that would pull my shoulders back, helping me to avoid bending or slouching forward, while also helping straighten my back.
The only problem with the one we ordered was that the elastic at the waist wants to ride up to the natural small of my waist instead of resting on my hips. I feel that one with metal inserts that help it stay in place could be helpful.
For physical therapy, we want to straighten my torso because I have shifted my midline to the right while compensating for the left and avoiding pain. I cannot sit for very long, I want to naturally fold at the waist and slouch but the only way I can be comfortable is if I sit perfectly straight. Even over-flexing, leaning my shoulders back with chest pushed forward feels better than sitting normally.
We want to tighten the core while also correcting the problems that the two-years of slipping ribs have caused. I have a Thera-band and exercises to do daily. I am getting a large exercise ball sent to me, too, to help me stretch out the ribs and do my physical therapy activities at home.
Stretching the rib area seems to help, really taking in deep breaths and taking pressure from the tight xiphoid process and ribs. I feel tight constantly, I am constantly shifting my body trying to get comfortable and I am avoiding bending at the waist. Putting on pants and shoes are no fun for me, I miss the days when that was an easy task. I took those moments for granted.
I will see physical therapy next week and we will go from there. I am hoping that the rib tightness is just temporary until my body gets used to the ribs being in the correct place – I feel like it had been dislocated and moving freely for so long that now it is back where it is supposed to be, that feels like tightness. I am also monitoring the right side – bilateral dislocations can happen – and monitoring my 11th rib on my left side.
I am not 100% positive but I am willing to bet money that my 11th rib has started to push itself up and underneath the 10th. I won’t see my cardiothoracic surgeon until May – if all goes well – so I will mention my concerns to her then if I still notice slipping.
And, I saw Optometry, which is not a clinic that I see often.
I did have good news when I visited Optometry, so that is a win in the battle against Mary’s body. It was time for my eyes to be checked again, dilated and all. When we tested my vision, I didn’t require glasses! If you remember a few years ago, I was ordered a prescription for being farsighted.
We think that my eyes were experiencing chronic dryness that could have distorted my vision for a wrong reading. I have been using eye drops for a few years now, so my vision wasn’t as disturbed as back then. I was happy to hear that I didn’t need to wear them anymore. One less thing I have to worry about!! That is always a win in my book.
My eyes have not been as troublesome, with fewer styes and infections, with less pain in the mornings and less eyelash loss. After getting them dilated, I won’t have to see them for another year or so.
But dilating of the eyes. I hate it. I hate the drops, I hate not being able to see, and I hate not being able to open my eyes. Dilating the eyes and allowing all of the light in hurts my eyes and leaves me fighting to keep a migraine away. Sometimes I win, sometimes I lose.
And then there are these hands.
Lefty is all but healed from my latest surgery last September, with some residual nerve pains and some permanent numbness with my thumb and palm. It isn’t 100% but it is better than it was four years ago. It only took four surgeries including three ganglion cyst removals and a first dorsal extensor compartment release for the tendon sheath with De Quervain’s Tenosynovitis.
I have not worn a brace on my left hand since last September and I feel like this hand is recovering well. Having worn braces since 2016, not wearing two at a time and having a free hand is nice.
But. The right hand.
I have seen my hand surgeon mainly for my left hand but I have always mentioned my right-hand issues, too. We have done x-rays for both hands, steroid shots for both hands, physical and occupational therapy for both. The left took precedence with ganglion cysts getting out of control and the tendon sheath getting inflammation, even with wearing braces for years. They both suffer from DeQuervain’s Tenosynovitis, which is pain below where the thumb meets the wrist. There is a tendon there, I had my left wrist tendon cut last year and it has helped tremendously.
The right, it was not high-priority and we have avoided surgery on it because it is my dominant hand. Now that my left has all but healed, the right hand decided to really amp up its flaring and inflammation this year, so I have been back in my right-hand brace. I knew I should have called my surgeon in January but we couldn’t have predicted that all appointments would be canceled this spring.
I left messages with my hand specialist, letting him know how I have been managing the right wrist and the steps I am taking to make it not hurt, but there is little we can do at this point without me being seen at the VA. I did have an appointment scheduled but that has been postponed until May or TBD. Appointments are canceled, surgeries canceled, etc.
The plastic surgery and hand clinic have both called me to discuss my issues but I am just to continue wearing the brace until it is safe for the VA to start scheduling appointments again.
And then, my Crohn’s disease. I just had my 4th anniversary of my Crohn’s disease diagnosis on my beloved St. Paddy’s. I mention it on my social media sites, but I wish I could say that I am in remission with my Crohn’s disease and symptom-free. 6 years of struggling with IBD is no easy task, and I am indeed a Crohn’s disease warrior.
6 years ago, my life was completely different.
4 years ago, I was diagnosed with Crohn’s disease after two years of searching for answers. We knew I had Crohn’s disease but getting the diagnosis takes your breath away and leaves you sick to your stomach knowing this disease is chronic, ie. forever.
I know in my years of battling I have had a few Crohn’s related surgeries and procedures – including 2 perianal abscesses and 2 fistulotomies, 5 colonoscopies, 3 endoscopies, a double-balloon endoscopy, and, 3 pill capsule endoscopes. This doesn’t include the countless doctor visits and imaging tests.
Once I was diagnosed, I began sharing my journey, beginning my ICBW blog almost 4 years ago. I have tried to turn my Crohn’s diagnosis into my mission for remission, awareness, and education. I have tried to find recovery and healing throughout. I hope to inspire and help other IBD warriors, even if it is just a little bit.
And, Pill Capsule Endoscopy #3.
In my last blog, I had mentioned the MRI Enterogrophy (MRI E) and the scheduling of the pill capsule endoscopy. My MRI E went as well as expected. My body hates the Barium and Bisacodyl cocktail that is required prior to the scan. I can feel it in my stomach and I almost have to ask them to pause the scan because it affects my stomach so badly.
And if I am completely honest with you all, it causes me incontinence and both times I have had this scan with these medications, by the time the scan is over, I am in immense pain and I have not made it home in time for either. I have accidents, as some IBD patients tend to experience when their IBD is flaring and symptomatic. It is rare for me, but it does happen. It embarrasses me to no end in those moments and I end up in tears – but I have no control over my already unhappy bowels mixed with meds to delay them until it is too late.
Anyway, the MRI E showed nothing too worrisome for me swallowing the large pill capsule, with no major bowel wall thickening or strictures seen. I was given the go-ahead and I got to share my pill capsule endoscopy experience with Gali Health.
I know I have mentioned Gali Health a few times on my social media. Gali Health is a patient-focused health technology company that has created an app for IBD patients. The Gali app is somewhat like a personal health assistant that offers IBD patient perspectives with doctors and science-based information, too.
With Gali Health, I was a member of their Mental Health roundtable discussion and now we have teamed up to share some of my Crohn’s disease journey and patient insight – you can find their app in the Apple store with Andriod coming soon. I will be sharing some articles with them in the future and I am excited to share that with you all, too. Check out their Instagram highlights or mine, the videos I took that day are still available.
Starting with a liquid diet the day prior, with Magnesium Citrate and Bisacodyl tablets, I got to swallow the large pill early the next morning and take some video throughout my day. The medication cocktail that you may or may not get prior, it works like a bowel prep, cleaning out your bowel for better viewing and images.
I had the fanny-pack battery, with a waistband velcroed on, too. This allowed the photos taken with the pill capsule to be transmitted for viewing. With the pill capsule taking around 55,000 images at two per second, the images display a video-like viewing.
You are not supposed to eat or drink anything for the first few hours, sometimes even having to wait until after you return the equipment later that day. The battery lasts around 8 hours, with you wearing the equipment until then.
You cannot bend over, lie down or do any crazy exercising like jumping-jacks, as this can move the pill capsule into a position to get stuck. And that is what you want to avoid, the pill capsule getting stuck. A bowel obstruction caused by the pill capsule usually leads to surgery and that is not something I wanted to go through. Watching for swelling, stomach pain and vomiting, you are to take it easy and just let the pill capsule go through your entire digestive system.
Now, the pill capsule is about the size of my thumb and I usually have to try twice to swallow it. The pill capsule should leave your body naturally if there are no problems that arise. From mouth to anus, the pill capsule will take images of your entire digestive system, or however many images it can get before returning the equipment.
You will NOT return the pill capsule that you swallow.
The pill capsule itself will /should exit your body in a day or two, I know that I have seen two of the three pill capsules that I have done before exit my body. I only know this because they were still blinking with a little white light when they exited. See Pill-Cam Results & My Crohn’s Plan.
The pill capsule allows my gastroenterology team to view my small bowel, and since I have small bowel Crohn’s disease, normal colonoscopies and endoscopies do not view my main areas of inflammation. The pill capsule allows my care team to look for internal bleeding, ulcerations and lacerations, cobblestone textures with erosions, polyps and overall Crohn’s disease management after being on Stelara for two years.
I completed the pill capsule endoscopy in early March and I am still waiting to see the photos/video with an update from my gastroenterologist. I have been slightly impatient – but at three-weeks after the pill-cam, I am anxious to see the results and share them with everyone and Gali. I would like to know how the Stelara is working, too, since we are discussing upping my dosage.
I emailed my care team for an update and for a hardcopy of the footage for my own personal records. I really just want the photo of me waving to my care team before I swallow the camera. Haha.
I do know that during my last gastroenterology appointment, prior to my pill capsule, that my GI mentioned having IBD with IBS-D as well. This means, that even though I have IBD, that I also have IBS – that irritates my stomach and causes symptoms, even exacerbating my IBD. This means that I can have symptoms of bleeding and diarrhea without having active Crohn’s disease. Am I in remission with IBD and having symptoms of IBS? This is why we check antibody levels when on certain medications and biologics and this is why we do testing like the pill capsule, to see disease management with current medications.
So, I had blood work ordered for this week, my first time visiting the VA since the pill capsule endoscopy. I have canceled everything else, but I had to go get blood drawn for liver and kidney panels, the usual blood orders I have to get done every few months, with antibody levels tested this time, too, for my Stelara maintenance before I had my latest self-injection later that afternoon.
I wore my mask to the VA and I did not touch anything. I know, I know my mask isn’t up to standards (N95) but those are harder to come by and needed my healthcare professionals more so than I. I am staying inside, I only had to be in and out of the VA quickly, and the mask I use is better than nothing at all. With my compromised immune system, I am trying to be careful.
The latest, Stelara #14, I changed up my injection preparations. I still took premeds to avoid migraines and nausea all day, but I didn’t ice my stomach before injecting like I have done previously. I don’t ice my left side anymore, I am still mostly numb on that side from the neurectomy surgery, but the right side I was still icing up until this injection. I have found that icing the skin makes the skin tougher to break and it makes it harder to inject the medication. Without icing first, my skin is not as tough and I can inject it easier.
Until I hear back from my gastroenterology team about my Stelara levels and pill capsule endoscopy results, I am on standby for my Crohn’s disease update. I am supposed to have an appointment at the end of April but I am expecting them to cancel.
All of my future appointment except one has been canceled with no rescheduling available. I will have to wait to see my hand specialist, wait to see physical therapy in person, wait to see rheumatology, etc. I assume the one appointment that I do have scheduled will be canceled, and I will be waiting for them to call me in early May.
Other than blood work, I have only really left the house once – and that was for a photoshoot – I know, shame on me. We maintained our distance while trying to appreciate the scenery that Lexington Cemetary had to offer.
During this quarantine, I have been practicing self-care and taking care of me. This includes crafting and writing, with hair masks and face masks, by doing my nails and baking lots of sweets. I have spent a lot of time outside with Baby Bilbo and I have been lucky enough to have found 66 clovers this year – so far. I am going to surpass last year’s total of 81 found, for sure.
Before the chaos, I did get to participate in the Lexington VA’s Badges of Honor photoshoot. The photos will display tattoos of veterans, or Badges of Honor, and will be displayed at one of the Lexington locations. I will share those once I get mine back! They did upload a preview video and I found me – see below!
I have been slightly affected by the COVID chaos, though. I work with IBD News Today, who gets funding through clinical trials and without their funding, they had to lay off some of their writers, including me. I hope that this madness will end sooner than later and that I can continue working with IBD News in the future. Until then, I will be working on writing for Gali Health, so hopefully, I can continue to bring you IBD specific content.
Otherwise, I plan to continue staying home and social distancing myself by avoiding going out. I have avoided stores and most places until now and I will make sure to keep my distance and wear my mask if I do have to go somewhere.
I hope you all are staying safe and smart. For me, It Could Be Worse.
CURE for IBD: For those of you who are continuing to donate to the Cure for Crohn’s and Colitis, I encourage you to donate towards my team page with CURE for IBD – where 100% of the funds WE raise will be allocated to IBD research for a cure. That’s right, 100%!!
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